Hepatitis C Testing & Treatment: An Advocate's Perspective
In today's article, HepatitisC.net advocate Daniel Winterbottom talks all things testing and treatment for hepatitis C.
How do you feel about new guidelines that recommend all adults be tested for hep C?
A one-time hep C testing policy for all adults has clear pros and cons. Many infected with hep C could have contracted it 30-40 years ago and remain unaware they are infected until symptoms become evident and damage to the liver irreversible. When tested, discovered, and caught early, hep C damage can be minimized, and through treatment, the disease can be eliminated. If the test results are negative, or even positive, the result can relieve anxieties long-held, but those who thought they were exposed but had avoided being tested. When negative, relief is immediate, if positive, treatment can usually begin and the disease eradicated.
Why test all adults? The US blood collection program was established in 1940 and by 1970, blood banks began transitioning to an all-volunteer program. It wasn’t until the early 1990’s that blood testing began, and only in 2002 did the nucleic acid amplification test for hepatitis C virus (HCV) become licensed by the US Food and Drug Administration.1 Those who received blood transfusions or organ transplants before the early 1990’s may have been unknowingly inflected. The CDC recommends that any recipient of an organ transplant or blood infusion before 1992 get tested. Testing would enable those unknowingly infected, or in denial, to consider options for treatment.2,3
That said, to force anyone to be tested raises troubling ethical and legal questions. Ownership of one’s body is a right that belongs solely to that individual. Their right to privacy regarding personal matters and choice of what tests they take has, with a few exceptions, been left to the individual. In the midst of a pandemic, this is a timely topic and one might ask, should everyone be tested? In a pandemic such as COVID-19, not being tested could jeopardize another people’s health. There are, however, some differences. Hep C is not airborne and other than sharing needles, or being treated for open wounds, the chance of transmission is rather low. The US is a democracy and in in theory, we have a right to choose for ourselves and not being forced to be tested against our will.
Negative attributes must also be considered. Any testing with potentially lethal outcomes is stress-producing. Having all individuals of a certain age grouping take such a test can negatively affect their psychological well-being. Certainly appropriate counseling and outreach could diminish the stress, but for the number of people, it’s a challenging task with both logistical and economic impacts. That said, assessing thousands of patients who might pass the virus to others and get them into treatment may well be worth the associated costs.
What advice do you have for people who are scared to be tested?
I was one of those people in denial, one who should have gotten tested decades before I did. Luckily, I had a manageable genotype that was successfully treated. The fear kept me away from being tested much longer than was logical, as the illness could have caused life-threatening damage my liver and other organs. Once I was diagnosed, a great weight was lifted, though another soon needed to be faced. The treatments at that time had extreme side effects and low cure rates, thus I had to sit it out, hoping a better treatment would soon become available. It did and after several years, I was treated. Today, treatment is readily available, with few side effects and a very high, up to 90%, cure rate regardless of the genotype. Being tested can save your life. One should really be scared not to get tested, since the unknown will often cause more damage than the known. If you have a doctor you trust, one that can explain the disease and treatments and have a personal support system to alleviate the sense of isolation and stigma, you’re in good hands. Unless the test comes back as an untreatable variety of hep C, you’ll be improving your health outcomes, and in the majority of cases, understand that you're not infected. Even with the worst outcome, you can get care to delay the progress and increase both your well-being and probably your life span.
Given you own experiences with pre-diagnosis anxiety, what are your thoughts?
I suspect one’s pre-diagnosis anxiety is elevated if there are indicators for a positive diagnosis, mine certainly was. If you have any risk factors for hepatitis C, anxiety is a common and natural reaction. I think the sooner one does get tested, the sooner the anxiety will abate. A positive diagnosis opens up the avenue for treatment and a negative outcome alleviates any uncertainty and fear that it was contracted. Talking with those you trust and will be non-judgmental may reduce the anxiety and open a discussion about the pros and cons, and diminish the alienation and loneliness associated with the disease. Gathering information on the disease, the testing procedures, and implications of the results and treatments can also lessen the anxiety. The anxiety doesn’t vanish, but continues to nag; Therefore, the only way to conquer it is to get tested and deal with the results in an informed and considered manner.
Does reading hep C patient stories aid you in your journey?